Newsletters – 2018

I’d planned to send out a full newsletter on Wednesday night. On Wednesday night I was drinking chocolate milk at my computer desk. Just as I was typing in e-mail addresses for my members to send out my newsletter I knocked over the chocolate milk. Somehow I hit delete on my keyboard and lost all of my newsletter. I was so pissed off! I’d just finished the newsletter but hadn’t made a copy yet. The following is what I managed to remember. Mr. Short Term memory (me) was challenged to do this much. What a doofus, I apologize.

I’m going to discuss a couple of things in this newsletter. I had my teeth taken out on August 20th. I’ve felt just crappy since the operation. For the last 40 days I’ve done absolutely nothing. First, my mouth and face hurt for two weeks. The numbness in my chin ended just last week. I’ve also been feeling just exhausted. My fatigue has seemed more worse than in recent memory. I’ve always been an early riser. However, after my tooth extractions I just laid on my bed watching TV and dozing on and off all day. I was just a load! lol

When I wasn’t resting one good thing I found on my computer was a Solitaire game. To date I’ve played about 1,400 games. I spoke with my neurologist and my oral surgeon and both said extracting 26 teeth could possibly lead to more fatigue. I like both of my doctors but neither seemed to want to commit to anything. Couldn’t they just say yes, you feel more fatigue because of the surgery! I suppose they are worried about law suits. My guess is that my immune system went to fight the healing in my mouth and everything else in my body went haywire. Today is October 4th and my fatigue is slowly coming back to it’s usual crappy level. lol

One thing I never ever thought I’d have to deal with from Multiple Sclerosis is bed sores or pressure sores. However, for the past six months I’ve had bed sores as a result of sitting on my scooter or toilet seat for roughly 12 hours per day. Those things can hurt when you accidentally sit on them wrong. lol

** The following is from the National MS Society website: Pressure sores, also called bed sores occur when the skin breaks down from constant pressure especially from sitting or lying in one position for any extended period of time. The pressure cuts off the blood supply to the underlying skin, fat, and muscle. These sores usually occur over bony parts of the body — tailbone, buttock, heel, shoulder blade, elbow, and occasionally the back of the head. However, pressure sores are not limited to these areas and can occur other places as well. Sores may also develop from friction to the skin. This is called shear and may result from sliding across a bed or wheelchair seat. Because the skin is much more likely to break down if it is moist or infected incontinence of bowel or bladder can add to the problem.

Several interacting risk factors have been identified in the development of pressure sores:
– Immobility or inactivity
– Decreased sensation
– Bowel or bladder incontinence
– Poor nutrition
– Older age
– Obesity — the extra weight can contribute to the formation of sores
– underweight — bony body parts can contribute to the formation of sores skin and or dehydration
– Moist skin
– Smoking
– Diabetes, anemia, or cardiovascular disorders
– Cognitive confusion
– Pressure sores begin as relatively benign problem, but can quickly progress to a more serious problem if left untreated.

Stage 1 — A small area of warm, reddened or purpled skin that does not return to its natural color when pressed.

Stage 2 — The outer layer of skin breaks down. Blistering and swelling as well as warmth and redness may be seen.

Stage 3 — Live tissue dies. The sore extends down into the deep skin layers and to the fat and muscle immediately beneath the skin. This hole or crater has a foul smell.

Stage 4 — The sore extends down to the deep muscle, possibly down to the bone. Infection may occur and may tunnel under the skin, increasing the size of the sore.

The best way to treat a pressure sore is to avoid developing one in the first place.

– If you are not mobile your position must be changed at least every two hours.

– Your bed should be fitted with a mattress or a mattress pad that is capable of alternating and distributing the pressure applied by the body on the mattress.

– Foam “egg-crate” mattresses are not recommended for prevention.

– You should use padding or boots for pressure points (e.g., elbows, heels). –

– Nurses, physical therapists, and/or physiatrists (physicians specializing in rehabilitation medicine) are the best sources of guidance about prevention of pressure sores.

– If you use a wheelchair it is important that you sit on a cushion that distributes your weight. A gel-filed cushion is often recommended. Ask your physician or physical therapist about an evaluation by a seating specialist. Sitting on pillows, towels, or foam pads may add to your risk of developing pressure sores.

– The treatment of pressure sores becomes more difficult as the sore advances in severity. A Stage 1 sore is usually well managed by eliminating the source of the pressure. This should result in a rapid resolution of the early pressure sore. Stage 2 sores can be treated by medication and protective coverings, under the advice of a physician or wound specialist who may be a nurse of physician.

The treatment for a Stage 3 or 4 sore often involves long-term dressings, a special bed, medications, (including antibiotics if there is insufficient healing), and perhaps even surgical intervention.

** It is thus imperative to see your physician if you suspect that a pressure sore has begun.
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My MS has also given me something called disinhibition. I define it like this. I say what’s on my mind and it’s usually accompanied with colorful words. Fortunately or unfortunately, my wife Doris hears about 95% of my disinhibition and colorful words when talking about something. Another thing that happens is I can fly off the handle quickly. Simple things that in the old days didn’t bother me can now really piss me off! I’ve also had some faux pas in the past 20 years when I said something in public that I shouldn’t have. The brakes in
my brain to not say something are worn and need to be replaced. lol

** The following information comes from Wikipedia. In psychology, disinhibition is a lack of restraint shown in disregard for social conventions, impulsivity and poor risk assessment. Disinhibition affects motor, instinctual, emotional, cognitive and perceptual aspects with signs and symptoms similar to the diagnostic criteria for mania. Hypersexuality, hyperphagia, and aggressive outbursts are indicative of disinhibited instinctual drives.

Disinhibited behaviour occurs when people do not follow the social rules about what or where to say or do something. People who are disinhibited may come across as rude, tactless or even offensive. For example, a person with a brain injury may make a comment about how ugly another person is or a person with dementia may have lost their social manners and look as though they are deliberately harassing another person.

The reasons why these behaviors may occur include:

– Damage to the brain such as in brain injury, usually the frontal cortex areas (part behind the forehead)
– Difficulty thinking about the consequences of their behavior
– Misinterpreting social cues; poor social judgement
– Being unable to communicate in an appropriate way
– Feeling lonely
– Discomfort such as being too hot or cold may lead to undressing or a urinary tract infection may lead to touching one’s own genitals

Provocation

As much as I like to piss and moan Doris and I learned some upsetting news last week which make my problems seem tiny. Doris is from Lima, Peru. Last week we found out Doris’ sister Edith has cancer. She had a tumor in her lung which had traveled to her brain and kidney. Then three days ago she suffered a stroke which has paralyzed her right side.

Edith is only 45 years old and literally has done nothing in her life but work. At this time her prognosis is not good. I worry because healthcare in Peru is not the best. It’s enough to make me want to cry but I have to be strong for Doris. Just goes to show me there is always someone worse off than you.

That’s all I can remember right now from the original newsletter. Everybody take care and be good.

I apologize for my late newsletter but the last 30 days have been trying to say the least. My newsletter is short but here is what has been going on in my life.

Favorite month:
Because of Multiple Sclerosis September has become my favorite month of the year. I think the majority of people look forward to the summer months but I don’t anymore. High humidity and temperatures can just slow me down. And I don’t mean temperatures in the 90’s. Anything over 80 degrees and I’m looking for air conditioning! I don’t get out much anymore and I joke to people when I am out that I’m the whitest guy I know.

If I’m out too long I can also get some brain fog, too! My head and thoughts feel like there in a cloud. However, in September temperatures in the upper Midwest are usually in the 70’s which goes well with my sensitivity to heat. I can get outside and scoot around the neighborhood if I want to. Travel in general is just easier. Nowadays, it’s the little things in life that make me the happiest.

Different ride:
Luck sure is a strange thing. Normally, I don’t think anyone with MS would consider themselves too lucky. However, I guess I still have some left because here is what happened to me in the past month. My wife Doris and I had been looking for a handicap accessible van for the past year. It was getting harder and harder for me to transfer to the driver’s seat in our current van. In fact, it was kinda dangerous what I would do to be able to get in the driver’s seat.

We wanted to get something that would make transferring less dangerous and loading my scooter a little easier. There is a local truck equipment company in Fargo that does van conversions. We looked at their website and the least expensive converted van was $22,000 and the highest priced van was $61,900. A similiar van to what we bought was listed at $33,500. We also priced other used handicap vans and they are not cheap! Even though Doris and I are independently wealthy (yea, right lol) those prices are out of our league.

Long story short but three weeks ago Doris and I bought a used handicapped accessible van. The van is complete with a ramp in it. The sliding door on the passenger side is remote controlled. All I have to do is push a button on my key chain and I can drive my scooter right into the van. Once pushed the passenger door opens and the ramp automatically comes down! It’s kinda cool!

Then all I have to do is drive up the the ramp and I’m inside. Then the passenger seat swivels so I just swivel the seat around to face my scooter. I still have my upper body strength so I can transfer from my scooter to the passenger seat really easy. From there I can do a quick transfer to the drivers seat and away I go!

This sounds funny but it’s all true. The van we bought was owned by a little old lady in a small North Dakota town called Rugby. Rugby is three hours away from West Fargo where I live. The lady was disabled with heart problems and terrible arthritis. Unfortunately, the woman passed away about 6 months ago. I happened to be at a doctor appointment one afternoon in early August. When I was scooting to the parking ramp I just happened to meet the elderly lady’s daughter who now lives in Fargo. The daughter’s name was Colleen.

I generally talk too much and I’ll talk to anyone that wants to listen. lol Colleen works at the hospital and was leaving to go home. We were both parked in the hospital parking ramp. We exchanged pleasantries and somehow we started talking about handicap vans. She explained her mother’s disability and how her van had helped her. I mentioned we were looking for a used van to buy that had a ramp. Well, if I hadn’t been lucky and chatty the following wouldn’t have happened.

To our surprise Colleen said she might have a van for sale. It was her deceased mother’s van. She had to check with her family (10 brothers and sisters) to see if they still wanted to sell the van but she was pretty sure they would. She e-mailed me pics and I stared to get excited! The next week she checked with her family and they did want to sell.

I then told Colleen to get the van down to Fargo from Rugby which she did the following weekend. I had my mechanic check out the van and a deal was struck. It’s a 2007 Dodge Caravan with only 68,500 miles on it. The body was in great shape and the interior spotless. Last year Doris and I only put about 1,500 miles on our current van. Dodge Caravans are supposed to last at least 200,000 miles or more. I figure the van we just bought will be the last vehicle I’ll have to purchase for the rest of my days. We paid a good but fair price and everybody was happy!

Teeth removed:
On August 20 I had surgery to remove my teeth! Two of my front teeth had already broken off or fallen out. All the others were losing enamel so they didn’t have too long to go before they would break off or fall out. The surgeon also said that bacteria in the mouth can also get in the bloodstream. Once in the bloodstream it can possibly get to the heart and lead to heart problems.

In all I had 26 teeth extracted. My face and mouth have hurt for two weeks now. Today is the Sept. 4th and part of my chin is still numb. After the surgery my MS fatigue also seemed to be worse! I didn’t want to do anything but watch TV. Two weeks after the surgery and I’ve had no infections and I’m glad to say my MS fatigue is back to its normal crappy level.

I know I didn’t take care of my teeth too well in my youth but I’m blaming steroids for the tooth damage. I took alot of IV steroids in the 90’s for my MS exacerbations, I’ve been taking my asthma inhalers for 30+ years which have some steroids in them and recently someone told me that Copaxone can cause teeth problems. I only took Copaxone for my MS for 20+ years. My neurologists always said that IV steroids aren’t the best but none of them ever said anything about teeth being affected.

One problem that developed after the surgery was this. I was given antibiotics to help with possible pain and infections. These antibiotics can also cause diarrhea which is not a good thing for a guy with bowel troubles. I’ve battled with that for two weeks now and frankly it’s exhausting! I was scooting back and forth to my toilet 6-8 times per day. Fortunately, so far I’ve only had two accidents and hopefully no more! All in all I’m glad I had the teeth extracted and looking forward to dentures!

Bad fall:
On Sunday August 30, I had one of my worst falls in recent memory. I don’t like to fall because it drives the nerves in my body crazy! It’s like sticking a bobby pin in an electric outlet. I have to explain this. In my bathroom I have a small wooden stool which is the same level as my toilet seat. I transfer to and from the small stool from my scooter when I have a BM. After BMs I hoist myself up onto my scooter and drive away. When I finished my BM on the 30th I transferred to my small stool. I then lined up my small stool with my scooter to hoist myself onto the seat.

When I started my hoist I knew right away I wasn’t going to make it. It was 5pm and I was tired. When I knew I wasn’t going make the transfer I tried to lower myself down slowly. It never works out that way though. I ended up falling two feet from my scooter seat to the floor. I learned a long time ago that when you fall you should try to keep your head up.

Well, I kept my head up but guess what was behind me? That’s right, my small wooden stool was still back there. I hit the back of my head on my little wooden stool so hard it pushed the stool up against the wall! The wall didn’t give and I struck with such force I had an instant welt that I still have 2 weeks later. I had some choice words about my stupidity as I lay on my bathroom floor kinda dazed. I was also wondering how I was going to get back on my scooter?

I knew I wasn’t going to be able to get back on my scooter so I decided to crawl to my living room couch. I can’t get on my knees anymore (it’s painful to do this) so I did my sliding on my butt. After 15 minutes I was halfway to my couch. Luckily, my wife arrived home from shopping. She took one of my arms and dragged me the rest of the way to the couch.

Once I got to the couch I had my wife put a pillow under my knees. She then drove my scooter so I was between the couch and scooter. I put one hand on my scooter chair and one on the couch and I was able to hoist myself up enough to sit on the couch. Then I transferred to my scooter like normal. I joke with others that you can punch me in the mouth but don’t tip over my scooter. I’m like a turtle on his back. With this last fall I proved to myself I am definitely DISABLED.

Anxiety:
What made me the most proud concerning my surgery is that I contained my anxiety before the surgery! I don’t like doing much these days before 11:00 am because of my anxious thoughts and bowel problems. The hospital is in downtown Fargo which is about 10 miles away. I was supposed to check in at 7:45am. I had to get up at 6am to make it. Over the past 20 years I would have started fretting about that time two weeks in advance until my anxiety was sky high. I’ve always said that anxiety is worrying about nothing!

The way I’m controlling my anxiety is to simply not think about what I have to do. I’m just completely blanking out what is happening or going to happen! I realize that’s easier said than done but it does work. On my surgery day I knew the hospital staff would take good care of me and they did! The procedure had to be done and it was. I’m happy!

Moodiness and Irritability:
Moodiness and irritability may manifest as rapid and generally unpredictable changes in emotions. Family members may complain about frequent bouts of anger or irritability. The increase in irritability and moodiness can have multiple causes.
* Many people who are depressed become irritable or moody
* Changes in the brain may be responsible.
* The challenges of life with MS can make many people feel irritable.

Whatever the cause emotional lability can be one of the most challenging aspects of MS from the standpoint of family life. Family counseling may be very important in dealing with emotional lability since mood swings are likely to affect everyone in the family.

A correct diagnosis of the problem is essential in order to identify the right treatment. An antidepressant may be the optimal treatment if depression is the cause. However, a mood stabilizing medication such as valproic acid which is an anti-convulsant medication that is used in low doses to stability mood. This may help with severe mood shifts and emotional outbursts.

Emotional lability is a sign or symptom typified by exaggerated changes in mood or affect in quick succession. Sometimes the emotions expressed outwardly are very different from how the person feels on the inside.

For me personally I know I can be short tempered or short if something doesn’t go my way. Sometimes I’ll snap at my wife for things that would have never bothered me before my MS got worse in 2011. I blame it on not working and having enough to do for the past 15 years. Most days I’m bored to death! I think starting my blog has helped some. I just keep plugging away! That’s all I got for this month, take care and be good! Any questions e-mail me at jwegner58@gmail.com
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August Newsletter – 2018
I saw this MS joke and I thought it sounds alot like my days.

I wake up everyday
planning to be productive,
then a voice in my
head says “Ha Ha, good one!”
We laugh and laugh and then
I lay down and take a nap!
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Exercise can be a real challenge for some people with multiple sclerosis (MS). Common symptoms such as weakness, numbness and balance issues can make physical activity difficult. It may even be a little intimidating. However, exercise is just as important for people with MS as it is for everyone else. A good exercise routine can even help ease symptoms.

Many people with MS find that water therapy is the easiest and most rewarding way to stay physically active. The buoyancy of water helps to support weak limbs, making them feel lighter. Water also provides resistance which helps to strengthen muscles. People with MS may find it easier to stand in the water than on dry land and there’s also a lower risk of injury due to a fall.

People with MS may find they have an increased range of motion in the water. There’s a lot less weight on your joints when your body is submerged. Swimming also can improve endurance, flexibility, strength and balance. Fatigue is the most common symptom of MS and often the most debilitating. According to the Cleveland Clinic regular exercise can improve MS related fatigue.

Swimming also can reduce pain. In a 2012 study a 20-week aquatic exercise program resulted in “significant pain reduction” among people with MS. Study participants also noted improvement in symptoms like fatigue, depression, and disability. An earlier study found that aquatic exercise enhanced quality of life for MS patients. **Above info from the July 2018 healthline newsletter.
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I had been jogging 2 miles per day when I got my MS diagnosis. In June 1991 for some strange reason I kept pulling the calf muscle in my right leg. I’d jog one day and pull the muscle. I’d rest it for 3-4 days and then jog again. The calf muscle would pull again. I’d rest it for another 3-4 days and then jog again. I’d pull the muscle again and rest for another 3-4 days. I did this 4 times and finally retired from jogging and looked for something else to do for exercise. It was now mid July 1991. It was about this time that I got my MS diagnosis.

Looking for another exercise to replace my jogging I jumped into the outdoor swimming pool at my apartment complex. Not being a swimmer I taught myself a really bad breast stroke. lol Weather permitting I would swim outdoors for three more summers. In the wintertime I would swim at various health clubs. Then in 1994 my ex and I bought a house in a suburb of Minneapolis. There was a Bally’s Health Club about 2 miles away.

I joined the Bally’s club and started swimming there. I would swim 4-6 times per week until the year 2000. I was in good shape again! Then for some reason my MS started affecting my right leg. Nothing else, just my right leg. To do a breast stroke you need to kick like a frog. One day in January 2000 I got in the pool and my right leg wouldn’t kick like that frog. My brain would tell my right leg to kick and it just wouldn’t! It was just hanging there. My joke at the time was my left leg was kicking normally but not the right and I was tired of going around in circles! lol I often wonder if pulling the right calf muscle and my right leg not kicking in the pool were related? Maybe MS? We’ll never know?

The only complaint I had with Bally’s was that the floor of the locker room, shower and all around the swimming pool were brown quarry tile. When the quarry tile got wet it was slippery! If I had a brain I would have bought a pair of sandals but I never did. In 1996 after my swim one day I slipped on the wet quarry tile going to my locker. I fell on my right shoulder and jammed my right arm above my head! I was shook up but shook it off. The reason I tell you this is because I can no longer put any pressure on my right arm. To clarify I can put pressure on it but longer than 5 minutes and it starts aching. What does that have to do with this newsletter? Read on….
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I sleep terribly at night. Part of the reason is because my body aches. Different body parts ache when I move in different positions. I was wondering today if anybody else has sleeping problems? Send me an e-mail if you do, jwegner58@gmail.com. I don’t like sleeping on my back or on my stomach anymore. If I do my back starts really hurting at my waist in a matter of minutes. Because of my Bally’s bum arm I don’t like to sleep on my right side. Nowadays, I sleep 95% of the time on my left side.

Starting at 9pm every night I fall asleep watching TV. I might sleep 15 minutes or maybe for 2 hours but then I wake up probably because my TV is still on. lol It then takes about 20-30 minutes to fall back to sleep. I usually get up once per night to urinate. This week my bowels are a mess. If I go to the toilet to have a BM it can take up to an hour to complete. Last night I thought I was going to have a BM twice in the night so I was awake at least 2 hours. Long story short I normally only sleep 3-5 hours per night. Most days fatigue is a problem for me but I understand why! I’ve gotten so used to my way of sleeping. My neurologist says, “sleep when you’re tired” which I do.
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I dug out my ancient memory for this part of my post. In January of 1982 I started managing that racquetball club. I also started eating and not much exercise. On January 1, 1984 I was fat!! Too much beer and too many pizzas. Wanting to look like a health club manager I decided to lose 30 pounds. It took me four months to do but on May 1, 1984 I was 30 pounds lighter. I did this by playing racquetball, riding a stationary bike, paying attention to what went in my mouth and counting calories! Unfortunately, like many people I’ve been gaining and losing that same 30 pounds for 34 years now.

Three years ago in March of 2015 I got on a scale at my neurologist’s office. I weighed a whopping 251 pounds!! Never ever in my life had I weighed that much. I was a tub of flub! I guess when I stopped standing and walking in 2011 I should have stopped eating, too. lol I went home that day and immediately put myself on a 1,500 calorie per day eating program. I also figured my Cokes and chocolate milk in that 1,500! After my drinks I probably was eating only 1,000 cals per day.

At the same time I got out my Post-It notes. I wrote down everything I ate and drank for two years on Post-It notes! I ate everything I wanted to but just kept track of the calories. Calories are easy to count. Here’s some examples… eggs (75 each), can of soup (150-180), 6-inch pizzas (300), fish (160), yogurt (100), rice dishes (150), slice of bread (70) were some of the things I ate. If I wanted a desert or chocolate cake I’d just count the calories and make it up later in the week. One pound equals 3,500 calories. You have to burn off or not eat 3,500 calories to lose a pound.

By March of 2017 I ended up with (two) 4 inch stacks of Post-It notes and I was 20 pounds lighter! It was great because I proved to myself I could lose weight without legs by just counting calories. It was a struggle at times but I did it. Jack LaLanne and Richard Simmons would have been proud! Guess what I did then? You guessed it, I was getting neurotic writing down calories so I threw away my Post-It notes and slowly gained back 20 pounds. I must still think that I have good health and losing weight is easy. Can you say DUMB A**!! I can! lol

That brings me up to July of 2018. I have to lose 30 pounds again with no legs. My wife and I had belonged to a health club in West Fargo for four years. We got in shape until my bowels and anxiety kicked in. The club was only 2 miles away but I didn’t even want to drive that far with my bowel problem. While at the club though I fell in love with the NuStep T5 recumbent bicycle. The T5 counts your miles, calories burned, your speed and how many minutes you rode. There are 15 different speeds and 5 different courses to bicycle. It’s easy for me to transfer to and from. When we quit the club Doris and I made the decision to buy a T5.

A T5 normally costs $5,500 and I don’t have that kind of money. We needed to buy a used one. Doris was diligent looking for a T5. She looked on Craigslist, Facebook and Ebay. After a year of looking Doris finally found a used T5 in Colorado. The lady was selling it because a disabled relative wasn’t riding it anymore. Not bragging but we were able to buy it for $1,000 and a $1,000 for shipping. I’m riding it everyday now and getting back into whatever shape is possible with PPMS. I’m excited and going to enjoy it tremendously!
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The following information came from WebMD.

Bladder infections have a way of getting your attention. You make countless trips to the bathroom and still you feel like you have to go again. And once you’re in there instead of mindlessly going about your business you feel burning or stinging every time you pee. When you get a bladder infection it leads to cystitis which is when your bladder swells and gets irritated. That is what causes the bladder infection symptoms.

Here are the parts of your urinary tract and what they do:

– Your kidneys clean waste from your blood and make pee.

– Your ureters are thin tubes, one for each kidney that carry pee to your bladder.

– Your bladder stores pee.

– Your urethra carries pee from the bladder to outside your body.

– Women get bladder infections much more than men do. Usually, the infections are more annoying than they are serious and antibiotics are the treatment. But they can travel up the ureters to the kidneys and cause more severe problems so it’s important to treat them right away.

– The main culprits of infections are bacteria, usually E. coli. These bacteria live on your skin and in your intestines. Most of the time they’re not a problem. Everyone has them. But if they get into the urethra they can end up in the bladder and cause an infection.

– Women get infections more than men because a woman’s urethra is shorter than a man’s and it’s close to the vagina and anus where bacteria live. Having sex, wiping from back to front after you go to the bathroom, putting in a tampon and using a diaphragm for birth control are all ways bacteria can get in.

During pregnancy the baby can press on your bladder which prevents it from emptying completely and gives bacteria a place to thrive.

After menopause women have less of the hormone estrogen. That causes the lining of the urethra to get thinner and may change the balance of bacteria in the vagina making infections more likely.

When men get them a prostate infection usually is the cause. Any blockage — like from a bladder stone or enlarged prostate — can prevent the bladder from totally emptying and cause infection.
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People ask me all the time how I can recall some of the things I talk about? First, I’ve always written down all my medical stuff thanks to my Mom’s teachings. Second, my long term memory is still good, it’s my short term memory that sucks. Lastly, when something major happens to me I guess it gets burned into my brain! On with my story….

I have had two bladder infections in my life. The first was in 1990. I wasn’t cathetering at the time. It was a Saturday at noon. My ex and I were going to meet another couple at a casino outside of Minneapolis in 4 hours. I remember I was laying on my couch watching a movie and got up to pee. In the bathroom urine was slow to start and I had a light stinging feeling at the end of my penis. After finishing I went back to my couch and movie. I thought I’d emptied my bladder but 5 minutes later it felt like I had to go again! It seemed strange to me.

The second trip to my toilet produced very little urine but that stinging sensation was worse. I went back to my movie but 3 minutes later the urge to pee was back. I thought to myself “what’s up with my penis today?” I urinated very little that trip. Forty-five minutes later back on my couch I was not feeling well. My forehead was hot, my penis was stinging and I was exhausted! The exhaustion probably was from my 5 trips to my toilet without much success. When my ex came home from shopping, I said “let’s skip the casino.” She still wanted to go but she could see I was hurting. We stayed home and 2 hours later we drove to a walk-in clinic.

At the clinic I explained my symptoms and the staff got me into a doctor’s office pretty quick. I laid down on a table and was given (3) 100 ml bags of saline solution. This took from 2pm until about 6pm. It also took care of the infection! The doctor told my ex later that they almost put me in the hospital! The doctor then gave me a prescription for a week’s worth of antibiotics. I don’t know how I got that infection and the doctor didn’t know, either. What it taught me though was to trust myself and to trust how I feel.

I was at work when I had my second bladder infection. Again, the uncomfortable feelings in my genital area and when I urinated it looked like chocolate milk. I’m serious! My urine was dark brown and thicker. I left work immediately and went to my urologist. He examined me and prescribed a weeks worth of antibiotics. After a couple of the antibiotic pills I was feeling better later that day. I now know when a bladder infection is starting. I drink tons of water and the infection never gets going.

That’s all I have this month. Thanks for reading!

Scooterjon
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July Newsletter – 2018</strong>Happy 4th of July

How’s everyone doing and feeling? I like to get my newsletters out by the 5th of each month. This month though it was too hot, too humid, I was too lazy, the 4th….I have a zillion excuses to choose from which I don’t like to do.

I have to admit I’m not the biggest 4th of July fan anymore. I understand the historic significance of the day, the importance of the day and all that stuff. I don’t know if others are like this but when I turned 30 years old the Fourth started to lose some steam for me. Over time as my MS has gotten worse I think more steam has escaped! In my defense how many times can a person oooh and aaah when watching fireworks? lol

When I really think about it though not enjoying July 4ths is probably the result of my MS! This may sound lazy but on the night of the 4th I would have had to take my scooter outside to argue with heat/mosquitoes. Then I have all my anxiety/bowel stuff to deal with and lastly MS fatigue! When 9:45pm came around my couch seemed like the best option so I laid down.

This year the 4th kind of screwed up the week anyway. I have a hard enough time remembering what day it is let alone have a break in the middle of the week. lol Have you ever thought how many functions you’ve missed because of your MS? If you’re like me it’s been alot!
============================== ==========Weather:

The weather has been good up here in North Dakota! Not much rain and temperatures like most of the country have been in the 80’s and 90’s. Most people are out enjoying the weather but it’s a tad too hot for me with my sensitivity to heat. That’s one of the irritating things about my MS.
============================== ===Fatigue:

I found these tips about fatigue in an old file of mine.
Thought it might come in handy for MSers like me.
– Fatigue generally occurs on a daily basis.
– Fatigue may occur early in the morning, even after a
restful nights sleep.
– Fatigue tends to worsen as the day progresses.
– Fatigue tends to be aggravated by heat and humidity.
– Fatigue can come on easily and suddenly.
– Fatigue from MS is generally more sever than normal fatigue.
– Fatigue is more likely to interfere with daily responsibilities.
– Fatigue related to MS does not appear to be directly correlated with either depression or with the degree of physical impairment.

Many people experience fatigue on a regular basis like I do. However, there is one type of fatigue commonly referred to as lassitude which is unique to people with multiple sclerosis.

Lassitude is thought to result from poor nerve conduction. It is caused by damage to the myelin around the nerve fibers in the central nervous system (CNS). Because of the demyelination your body has to work harder just to transmit messages between your brain and other parts of your body.

Lassitude may respond well to medication so talk to your doctor about whether a prescription would work for you. There are no medications that have been approved specifically for the treatment of MS fatigue. There are several though which are known to provide relief for some people.

By the year 2000 my fatigue was getting really bad! To combat this my neurologist prescribed a drug called Provigil. Provigil was a drug for narcolepsy (sleeping illness) but doctors determined it also helped MS fatigue. For the first two years I would take one Provigil pill and be wired from 6am to 11pm. It was great! It felt so great I went out and got a job selling cell phones!

Over the past 18 years though I feel my body has gotten used to it. It’s not as effective as it was in the beginning for me. Provigil has changed names numerous times but it’s still the same pill. It’s now called Modafinil.
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Get some exercise:

I’m guilty of my next topic but I don’t have much choice! I’ll be writing a larger post for my blog on this next topic but I’ll peak your interest today.

Too Much Sitting: Health Risks And What You Can Do

– Most American adults sit about 8 hours a day.
– All that sitting is not good for us.
– The longer you sit, the higher your risk of health problems.
– When you must sit for long periods there are small things you can do.
– Don’t sit if you can stand.
– Don’t stand if you can move.
– Rethink your chair.
– Walk, walk,walk.
– Sitting too long is harmful, even if you exercise.
– Stay active while watching TV.
– Keep moving on the go.
– Sit less. Move more!
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Scary Morning:

I was diagnosed with my MS in mid-July of 1991. At the time I didn’t know what to expect, how I was supposed to feel or even how I was supposed to act. I felt really good! I wasn’t feeling any pain, I was running my carpet cleaning business with four employees, I was country dancing at night, drinking beer and having a pretty good time! Multiple Sclerosis would just have to take a back seat. However, I was about to learn some new things about the disease in a few weeks.

It was the third week of August in ’91 at around 8am. It was then I had the strangest feeling I’d ever had in my life! I don’t remember where I was driving to or why but I was on the highway near the Minneapolis airport. While I was driving I suddenly felt like someone had lit a match to all of my toes on both feet. They were numb and tingly. It was like the feeling you get when you sleep on your arm over night. My toes and feet felt like they were asleep.

I continued to drive and when I’d driven another quarter mile the numb feeling moved from my toes up to my shins and then thighs. Remember, this is all happening within about three minutes. From my thighs that numb feeling went up to my stomach, then my chest, my neck and finally my face and head! When the feelings reach my face I decided to pull off the highway onto the shoulder.

I closed my eyes and took some deep breaths. I stayed on the shoulder for 15 minutes. When the sensations finally stopped I drove on. I didn’t have much to do that day so I just drove home. I rested for the rest of the day. I wasn’t sure what had happened and why it had happened but I thought if MS is like this it’s not going to be much fun!

Looking back now in 2018 what I’d had was an anxiety attack and it wouldn’t be the last!